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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Stewart

    Dr. Myhill On PACE and MAIMES - remake - thanks for your feedback

    @sianrecovery I still think this is a misguided campaign by Dr Myhill - but this video is much better than the earlier version was. Thanks for engaging with people's criticisms so constructively.
  2. Stewart

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    @Janet Dafoe (Rose49) I don't want to tear Ron's attention away from the research any more than is strictly necessary but I hope someone from the Stanford team will write a politely worded - and public - letter to the NIH expressing disappointment that the reasons given for refusing their grant...
  3. Stewart

    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    Sure - but that's why I specifically mentioned 'open-minded scientists'. There are some people who'll continue to believe that ME is psychological even when the biological mechanisms have been fully figured out. As Max Planck wrote "A new scientific truth does not triumph by convincing its...
  4. Stewart

    NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

    My feeling is that the SMILE media blitz is the second misstep by the SMC in recent months (with the first being Fartgate). Sure, they've generated acres of column inches that reinforce the idea that psychological interventions are helpful for ME/CFS - but in the process they've severely...
  5. Stewart

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    @charles shepherd Charles, Thanks very much for being willing to jump through so many hoops - getting up so early, travelling to Gloucester - in order to get just three minutes to explain some of the issues with SMILE. If I were in your shoes I'm not sure I would have pushed myself for such a...
  6. Stewart

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    I don't entirely disagree with you - in fact I think I was trying to make a similar point (but admittedly with a different emphasis). Lots of people push themselves the way Dr Myhill describes in that quote. Some people seem to cope with it fine, others burnout (and subsequently recover) and...
  7. Stewart

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    When I was at University (which was when my ME started) I used to stay up all night with coffee (admittedly white Nescafe Alta Rica - I was a heathen who drank instant back then...) and chocolate biscuits (well, chocolate bars - I remember that Galaxy Ripple and Cadbury Spira were favourites...)...
  8. Stewart

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    That's pretty standard for The Mail - they usually close the comments on an article after a couple of days.
  9. Stewart

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    I've just had a quick look on my iphone, and I can see six comments from you @alex3619. I may have missed one or two...
  10. Stewart

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    Try having a look at the comments using a mobile device (if you have one). On Wednesday I noticed that a couple of replies that I remembered reading seemed to have disappeared when I browsed through the comments on my PC. Later in the day I looked again using my smartphone - and the comments...
  11. Stewart

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    I think you're right to say that a public inquiry (let alone a Royal Commission) is unlikely to happen. I would go further though, and say that at present the odds of one being established are so vanishing small as to be practically non-existent. I explained why I thought this in a post I...
  12. Stewart

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    It suits the purposes of the SMC to present themselves as neutral and unbiased, presenting only "the best scientific evidence and expertise" without any agenda. And it suits the purposes of UK journalists to take these claims at face value and refrain from looking too closely at how biased the...
  13. Stewart

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    The Scotsman newspaper ran an admirably frank - and factually accurate - piece by one of its columnists in 2003, (mildly) criticising Simon Wessely for the detrimental impact he has had on ME research in the UK. It received an enthusiastic response from readers, and many supportive letters were...
  14. Stewart

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    Charles was responding specifically to your comment that "We need to keep calling journalists out or they will keep writing articles like this" and making the point that a bit of encouragement and constructive criticism would be a more effective approach.
  15. Stewart

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    @Janet Dafoe (Rose49) - I'm sure that all of us on this board stand right with you in wanting to see articles along those lines published. The problem is that - in the UK at least - we're still a long, long way from that happening. As incredible as it seems - and despite the overwhelming...
  16. Stewart

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    Another important reason for commenting / forwarding / liking this particular article is that the Daily Mail pays very close attention to how much of an impact its articles have (probably to a greater extent than any other British newspaper) and commissions more articles accordingly. Where they...
  17. Stewart

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    And now that the Daily Mail has printed this (is this the first time a major UK media organisation has highlighted the fact that the Tribunal judgement disproved the death threats narrative? I think it might be...) other journalists might also pick up on this point in their future coverage of...
  18. Stewart

    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    It's obviously completely up to you what you choose to like, retweet or promote in any way. But the more attention that articles like this get - highlighting the issues with PACE, GET and CBT and emphasising the biological evidence - the more awkward it will be for NICE to ignore the calls for...
  19. Stewart

    David Tuller / Trial by Error: My E-Mail Exchange With NICE Chief Executive 14 August 2017

    There's no point adding a mealy-mouthed disclaimer like that - as far as Sir Simon is concerned you've as good as admitted that you're actively plotting to have him burned at the stake. You should expect your post (highly edited and taken completely out of context of course) to appear in one...
  20. Stewart

    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    That's understandable, but very disappointing. I was hoping that if the MEA approached them privately they might be willing to talk about their experiences as a member of the group (I assume that NICE will have got them to sign some sort of confidentiality agreement, so I appreciate there may...
  21. Stewart

    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    Charles, Just out of interest - is the MEA in contact with the two remaining patient representatives who served on the guideline development committee? I would have thought they are the most likely candidates to be the patient representative in the expert group (and as far as I know they're...
  22. Stewart

    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    That's very true. But given what we (and they) know about NICE's self-imposed omertà around the membership of expert groups - and given that declaring a personal non-financial interest was not a bar to continued participation in the group's deliberations on the specific issue under...
  23. Stewart

    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    Actually we can. As I've suggested a couple of times (and as I'm about to suggest again - sorry to be a bore) we could get a helpful Parliamentarian to table a written question asking NICE for a breakdown by specialisation (ie. the two neurologists, three psychiatrists, one paediatrician and...
  24. Stewart

    Seeker on Montoya & PACE/fart-gate

    Fradulent Arseholes Routinely Tergiversate (Tergiversate - to make conflicting or evasive statements; to avoid, equivocate or deflect. But you all knew that... :))
  25. Stewart

    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    To be fair to Prof McCleod, you did put him in an extremely difficult decision with your pointed questions Jonathan. On the one hand, there's his publicly-stated and passionately-held commitment to rigorous, unbiased evidence-based research. On the other.... well, apparently his wife used to...
  26. Stewart

    The i covers PACE/fart-gate

    A couple of extracts... More at the link above...
  27. Stewart

    Scientists trade insults over ME (JHP special issue)

    To be fair, she probably didn't write the headline - and the sole use of 'yuppie flu' in the article made it clear it was a derogatory name which was used to trivialise the condition. But yeah - she probably won't use it again.
  28. Stewart

    Scientists trade insults over ME (JHP special issue)

    That's not my take on this at all - my take is that the SMC (or another PACE supporter) has (through carelessness or disorganisation) broken the first rule of media management. Namely if someone is trying to promote a negative story about you, do not - under any circumstances - do *anything*...